No more tangles

This is my hair. All of it. I shaved it off completely last Thursday for the first time in six years. As you'll notice, that's not a lot of hair. Keep in mind that my hands are the size of a 10-year-old's, and my hair was fairly long...a couple of inches past my shoulders.

Over the past 19 years, I've lost about 70% of the hair I had as a little girl. No one knows why. I have completely stumped 14 different doctors including internists, dermatologists, and endocrinologists.

The worst thing about it was the reactions I got as a teenager. When you're 14 years old and losing your hair, people assume that you're scrubbing your head with steel wool doused in turpentine. I've been asked a lot of stupid questions, and been given a lot of stupid advice. I've had strangers tell me to lean forward as often as I can so I'll improve circulation to my head. I've been told that my hair must have fallen out from blow-drying it too much. I've been a vegetarian since I was 17, and I have been told that my hair fell out from not eating enough meat. For this and many other reasons, I've barely left the house with a "bare head" since 2000.

A few weeks ago, I had a scalp biopsy after my new endocrinologist told me that my hair loss was far too extensive to be caused by an endocrine disorder. The results of the biopsy didn't indicate much of anything. It's not a fungus, stress, hormones, or a vitamin deficiency. It's not genetic. The only thing left is an autoimmune disorder, which would mean that I'm essentially allergic to my own hair. I already have Hashimoto's thyroiditis, which is an autoimmune disorder, and autoimmune disorders tend to flock together. Unfortunately, though, my pattern of hair loss looks nothing like any known autoimmune disorder. I was "diagnosed" with Alopecia NOS, which means "Not Otherwise Specified" which means no one has any idea what the hell is wrong with me. I had the biopsy because two different endocrinologists told me that my hair loss pattern resembled alopecia areata. I'm not a religious person, but I prayed my biopsy results would in fact reveal alopecia areata. Alopecians are like a family. They have support groups and conventions. I'd love more than anything to meet someone else who has gone through what I have in the way that I have. I still haven't found my family. I go to message boards for women with hair loss, and it seems that almost half of the women are 50+ years old with mild thinning, and almost all the rest are completely delusional 20-year-olds with no hair loss at all. I have found some people like me, though, which is a relief. My biopsy also argued against androgenic alopecia, which I was previously told I had. Androgenic alopecia typically happens to peri-menopausal women, not 10-year-old girls. I've read a lot about androgenic alopecia, and most of the time the literature will entail a statement like "androgenic alopecia can affect women as young as 30 years old." Where does that leave me? I turn 30 in five months, and I've been dealing with this about 19 years.

My hair loss started when I was 10, but most of my hair grew back once I started taking thyroid medication. I'm actually quite horrified to see pictures of myself from 2004. My hair really wasn't that bad, and I can't believe it went so far downhill in such a short time.

Shaving it was a relief and surprisingly liberating. A few weeks ago, I found myself staring at my bald spots in the mirror. I'd lift up the back of my hair and examine the little spots and streaks. I have pictures of my bald spots, but I'm not quite courageous enough to post those here. I don't want to wear my wigs anymore. I'm tired of it.

I had nightmares for years. In all of my nightmares, my dream would be progressing normally, then at some point I would realize that I wasn't wearing a wig and had no head covering. It was the alopecian version of the stereotypical "doing a class presentation in your underwear" dream. I realized recently, though, that I wasn't afraid of being bald. I was afraid of people knowing that I'm going bald. Somehow, that realization triggered something in me. I (almost) don't care anymore.

I don't have to shave my legs because most of my leg hair is gone. I'm losing my eyebrows as well. I'm actually okay and calm about this, and I'm getting stronger every day. Part of me wants to go to the alopecia areata convention this summer in Louisville, Kentucky. Just to connect. I don't have a diagnosis, so I'm still an outsider, but I do know the pain of losing hair randomly.

I've never wished for cancer, but I've often wished that I would have lost all of my hair. First of all, if I lost all of my hair, my parents or other adults would have recognized it as a real condition and I would have gotten to go to a doctor. Secondly, if I'd lost all of my hair, I'm sure someone (an adult or another child) would have stood up for me when I got bullied. Third, now that I'm shaving my head again, it would be nice to not have that extra hair to deal with.

There are many beautiful, strong wonderful people with alopecia. This video of a beautiful young girl almost makes me cry every time, despite the Kelly Clarkson soundtrack. The girl has less hair than I did, and she's gorgeous and she's smiling. I hope one day, that I can have her confidence. Until then...


---Zoe Doom